This is story of our daughters Taylor and Lauren, both with profound hearing loss, and the journey of getting and utilizing cochlear implants. Both have congenital deafness due to the Connexin 26 gene mutation.

Monday, April 30, 2012

I really wanted to focus on catching you all up on Taylor. We're going to have lots to come on Lauren, since her first CI surgery is only 8 days away.

Taylor has had quite a year! She has been in the special ed preschool here in town this year. She loves going to school and seems to have a great time. She sees the deaf educator twice a week and has speech twice a week during her preschool time. We have all seen great improvement in her articulation. She has just learned so much. We are now 5 weeks away from turning 4 years old.

We did some testing around the 2 year, 6 month listening age mark. For the Expressive Vocabulary Test and the PPVT, she tested like the average 5 yr 7 mo to 6 year old, respectively, or in the 99th percentile. Amazing. I never would have believed it possible three years ago. What a blessing in my heart as we approach Lauren's surgery.

What a year "3" has been! We celebrated her 3rd birthday at Table Rock Lake and Branson. We had family birthday parties at the lake. We rode go-carts and waterslides in Branson, rollercoasters at Silver Dollar City, and took a skiboat out of the lake. The girl is fearless! Last summer, just as she turned three, she was doing dives and flips into the pool. We utilized a water-proofing and swim cap method for her to use so that she could keep at least one CI on while swimming. It was a great summer.

We took a family ski vacation in January. Taylor went to ski school two days, and skiied with us another 3 days. She seems to be a born skiier. I'm going to have to take some lessons myself so that she and Derek don't pass me up in a couple of years.

We are moving to a suburb of Wichita next month, so new schools are being explored. The IEP renewal meeting is scheduled for May 11. Next year, we are planning to have her go to a wonderful Christian pre-school for three half-days per week and supplement with some AVT/speech services. We did her testing for the new school district that we are moving to last week, and she did exceptionally well. I think I know more about what to ask for... we'll see. As a parent, I am continually learning more about how to advocate for her and how to describe her uniqueness.

Sometimes I wish the CI's were invisible. I don't want CI's to affect other's perception of Taylor. Especially in the academic setting, I don't want the visual reminder to cause teachers to underestimate her abilities. I was really nervous about that last year as she entered the public school system. I'm not sure what their (the teachers) perception of her was at time. I do know that now they realize and acknowledge how well she is doing. I'm thankful to the wonderful ladies that have worked with her this year - Misti, Deb, Ani, Brittney and the para's too (wish I knew all of their names).

I have a feeling it won't be too long before Taylor wishes they were invisible. The other day, she said "Mommy, when I grow up, I won't have 'ears' anymore." I hope we find a way to always make it positive as she grows. Even as a toddler/pre-schooler, she is obsessed with growing up and always talking about what that means -- getting married, having a baby (named Lauren), being a doctor (like her daddy), wearing makeup (like her mommy)... you name it, she's thought of it. That day, she had noticed that she had 'ears' and I didn't. We make the 'ears' as cute as possible, with all of the Cochlear decorative covers and headbands matched to her outfits. We'll talk through it more when the time comes. For now, she's pretty excted that her little sister is getting ears just like hers.